We will always remember Ellie for her love for others, her creativity, sensitivity, and delight in life! Ellie's light has spread far and wide... may it continue to shine in our hearts.

Thursday, October 04, 2007

Test Results...

Ellie was a trooper for her bone marrow test this morning. She was nervous going in to it, and awoke feeling sore and dis-oriented. But Ellie was up and working with the hospital's teacher within 20 minutes or so.

Before we left the hospital, I had a talk with Ellie's oncologist. He showed me the results of yesterday's MIBG scan. Unfortunately, the test revealed that there are a number of "hot spots" showing Neuroblastoma in Ellie's bones (left shoulder, left hip, legs, one of her shins, and probably spine, ribs and pelvis). The CT scan showed no evidence of active tumors in any of the soft tissue - the old tumor in her head, or her abdomen. It appears that all of the active cancer is coming from the bone marrow. So even though we do not yet have the results from the bone marrow biopsies and aspirates, or the urine test (which shows the levels of NB in her body), we can expect that they will show positive.

I must admit that, while I wasn't really surprised, I took the news much harder than I expected. Somehow, just seeing the evidence right before my eyes was a pretty heavy blow. I did ask what treatment they would offer Ellie, and he said that there is heavy chemo (which John and I don't feel Ellie can handle), light chemo (which has some side effects that would be hard for her and may or may not make a dent in the cancer), and radiation to the specific sites. While he did not say it in so many words, my impression was that these treatments would be primarily to buy Ellie some time. I couldn't talk much in the moment, and told the doctor that John and I would discuss things and get back to him. The hardest part came when I had to go back to Mom and Ellie in the waiting room. I briefly told Mom, but started to get choked up, so I had to get away before Ellie saw me. Mom was wonderful - she held together and managed to take Ellie to get lunch and give me time to call John and Loretta. Talking on the phone completely undid me. Trying to deal with this over the phone with John was unbearable. He was at a gas station somewhere near Wyoming, and we each took turns crying. There was something so awful about not having our arms around each other in that moment.

This is what it all boils down to: there is no cure for Neuroblastoma. It is an aggressive, difficult cancer - with a very low long-term success rate. Sometimes the conventional treatments work, but many times they don't. Going forward with chemo (from this point) and having Ellie survive more than a few pain-filled years would take a miracle. Surviving this cancer with treatment by Homeopathy would take a miracle as well. (There is one possibility in the Homeopathic arena: sometimes in cancer treatment, it is possible for new tumors to show up while the patient is steadily seeming to get better. In a case such as that, the patient gets a little worse before getting better. It is by no means a guarantee, but it does give us some reason for hope.) This afternoon, through our tears, both John and I talked about how we want Ellie to experience as much joy and comfort as possible in living no matter how short her life may be. And if that life is short, then we want her to die at home in our arms instead of in an ICU somewhere. We did not make any final decisions or grand statements... we were just talking. But we were on the same page.

So after quite a long time on the phone, I was composed enough to go back up to the room and face Ellie. Now Ellie is only nine years old, but she's a pretty complex little girl. She doesn't miss a thing. And on those rare occasions when I am able to get something past her, she manages to still feel my emotions underneath the surface, and that is the most unnerving thing of all for her. I have learned to always talk to her with complete honesty, but to take her lead with how much she can handle. Ellie always shows me when to stop, or when to proceed. It is a fine line to walk, but it has always stood me in good stead. This is how the conversation went (to the best of my memory)...

Me: Come here a minute, I want us to have a little talk.

Ellie: Is this going to be a lecture?

Me: No! Where did you hear that from?

Ellie: TV

Me: You didn't do anything. I just wanted to tell you about my talk with the doctor. Your MIBG scan showed that there are some places in your bones that have cancer in them again. (We have always been careful to tell her that there was still cancer in her bone marrow that we were trying to fight. We never told her that it was gone completely.)

Ellie began to cry and hugged me close while she sobbed.

Me: What are you thinking?


Me: We don't want you to have to do more either. Daddy and I are still talking about what is best to do for you, and we do want to know what you want. But we don't want you to think that this is up to you to have to decide all by yourself. The doctor also said that we can do radiation on some of the places.

Ellie: (wailing) I DON'T WANT RADIATION.

Me: We don't want you to have to do that either. I'm not saying that you have to do it. I'm just telling you what we can do to try to help the cancer stop growing.

Ellie: I don't want to go away.

Me: Do you mean die?

Ellie: (crying) Yes.

Me: We don't want you to die either. You need to know that this cancer is very hard to treat. It's tricky and can be difficult to make go away. Sometimes chemo works well and it goes away. Sometimes kids have to get 14 rounds of chemo (and you only had 6!) and it finally goes away, but then sometimes it comes right back. There is no way to know. And it's possible that Homeopathy won't work either. We just don't know. But Daddy and La and I still want to do Homeopathy and good nutrition and we want to fight if you do. Do you still want to fight that way?

Ellie: Yes! I WANT TO GO HOME!!

Me: What are you thinking?

Ellie: (crying and hugging me) I'm scared

Me: Of dying?

Ellie: Yes

Me: (crying a little) The good thing about Homeopathy is that if it doesn't cure your cancer, it will help you die peacefully - not like being in the ICU with all of the tubes and wires. It can really help things to be easier and calm.

Ellie: I want to call La. Does she know?

Me: Yes - I talked to both La and Daddy on the phone this afternoon.

Ellie: Does Grandma know?

Me: Yes. I told her. La is waiting and can get on the web cam with us if you want.

Ellie: Yes!

So we got on the web cam and told Loretta about our conversation. And then we talked about how she can spend each day making the most of living. She can play and laugh and do school. Everyone should live each day like they don't have more time. People tend to either think that they have all the time in the world, or live in constant fear that something bad will happen. We just never know what tomorrow will bring, but we should live each day to it's fullest. Then Ellie began laughing and playing with La. The joy and peace that radiated off of her was palpable.

And so, while I said earlier that we have not reached a firm decision, you can see where we are headed. While Ellie is too young to make this decision for herself all by herself, this is about her. I believe that as parents, we are entrusted with our children - to make the best decisions that we possibly can for them - not born of fear or selfishness. I see such parents here every day. The paths they have chosen differ greatly, but there is not one whose courage I don't admire. They consistently demonstrate selfless love, whether it comes in the form of persisting with every conventional treatment known to man, walking away from certain treatments, keeping their whole family together, or living separated from spouses and children. I have been talking with a number of parents as well as the social worker here at the hospital. This disease is not a straight-forward kind of cancer that has a standard cure - one thing that works for most patients. Each and every person with NB seems to have something unique unto themsleves. And each family is faced with making the decisions that are best for them. There are no easy answers, and what is right for one is not always right for another. I have been thinking about that a lot today. I think that it is so easy to fall into the trap of thinking that our decisions are only "right" if they work out the way that we want. I have become more and more convinced that we often make right decisions that have unexpected outcomes. And that doesn't make them wrong. We cannot see the end from the beginning. We can only walk in humility before God, listening to His voice, and stepping out... often blindly.

I cannot promise you what our future will look like. But for now we are going home... to be together as a family... to live. And tonight John's heart is broken because he has missed the past two-and-a-half months of Ellie's life. Please pray for us. I wish that there was some way for John to be able to stay home for a time and spend some good quality time with Ellie.

The next three weeks will be busy as we prepare a place to live. Loretta lives in half of a small building on Mike and Reni's property. We had decided to temporarily move Loretta into the guest room of the big house and take her room, and then wait until spring to fill in the other half of the building - next to our room - for her. But in light of the new developments, we hope to find a way to get it all done. Should things with Ellie take a turn for the worse, we will need Loretta closer in the middle of the night. We would also like to free up the guest room for family and friends who come for visits.

Tonight I will leave you with the everlastingly wise words of my adorable daughter. She was watching a TV commercial for some cereal - Coco Puffs, I think. She rolled her eyes and drily commented "that's just death on a stick!"


At 9:36 PM, Anonymous mooki said...

i am heartsick that i saw you today in the waiting room, probably right in the middle of your anguish. i remember making some inane comment about your pretty necklace and being surprised that ellie was up and about so quickly after undergoing bone marrow biopsies. i am so sorry that you had to see that mibg scan alone.
this disease is just so, so awful. seeing you, ellie and your mom on monday was the high point of my week and i was hoping and praying for good news. when we ran into each other again at the elevator bank just a few hours later, ellie shyly glanced up at me and gave me a beautiful smile and "hello."
although i don't know you, i am so impressed by you and your family. you show such love and respect for each other, as well as immense sensitivity to others.
i will continue to pray and hold all of you in my heart. love, mooki

At 9:57 PM, Anonymous David and Kristen Burson said...

Our tears, prayers, and hearts are with you dear friends!
David and Kristen

At 10:47 PM, Anonymous kristen miller said...

"death on a stick" - oh goodness, ya'll HAVE been living with Loretta! i love how ellie picks up this stuff :)
I love you all so much and am praying with all that i have. thank you, once again, for your willingness to share the intimate details with everyone. you are so unbelievably strong, both you, elle, and johnny. it'll be so wonderful for everyone to reunite ... soon!!! endless love and prayers for you tonight - krissy

At 11:12 PM, Anonymous Anonymous said...

I have been reading your blog for months and praying for beautiful Ellie. Even though I do not know you, I feel as if I've gotten bad news from a dear friend and my heart breaks for you. God is guiding your steps and one blessing is that you, Ellie and your husband all agree on the best path to healing. I will keep you all in my prayers.

At 11:17 PM, Anonymous Anonymous said...

What a brave girl! You are all around incredible...And Ellie, I hope you know that there are hundreds of people out there praying for you!!!


From Circle Community Church :) :D

At 11:45 PM, Anonymous Anonymous said...

Dear Sarah,

You are in my prayers. You and John and Ellie and Loretta and everyone. Right after Loretta called me, Tracy (my good friend) and I joined in prayer for John's sorrow and also his safety while driving to Montana, Ellie's cancer and fears, your heartbreak and strength for Loretta and God's peace for your entire family.

God is leading you and he will give you peace that passes understanding in the midst of sorrow.

I am sorry my words are so weak and they can't lift the burden you carry, but please know that we are praying for your family and if there is any way we can help Ellie live life to the fullest we will do it. We look forward to seeing you again. Love, Sheri

At 12:05 AM, Blogger Phyllis said...

Crying, praying, and trusting with you!

At 4:34 AM, Blogger LindaSueBuhl said...

OK - the tears are flowing but some of them are tears of joy - we all know that life ends in one result - well maybe two - death or death of the body and then eternal life. We still don't know the plans of the Lord, but your plans are SO wise and gentle, we continue to pray for you every day and are so grateful for your updates. Tell Ellie that her namesake goat is getting SO tall and is very smart and pretty - kind of like Ellie! except lots hairier. Shalom.

At 6:18 AM, Blogger Becky K. said...

Praying! What an incredibly heartfelt post. I am so touched by your struggles. The tears are flowing.
All I can say is you are in my thoughts and prayers.
Becky K.

At 6:32 AM, Anonymous Anonymous said...

My heart is breaking for you with this news. Praying the Father continues to sustain you and give you wisdom.
You are such a testimony to the strength of the Lord.
B Stone in Sanford

At 6:55 AM, Anonymous Anonymous said...

What an amazing testimony to God's wisdom, grace, peace & comfort you all are. You desire to glorify God in all you do and it blows me away at how you are dealing with this. Not without tears, not as a super human but with an awesome, supernatural God at your side and all around you. You are in my prayers and I am praying for you all.

At 6:59 AM, Anonymous Anonymous said...

i had to go back and read it a second time because i could not see through all the tears. my heart goes out to ellie and all of you.my prayers are with you all and i i pray God gives you comfort and peace as you make your decision.you all have been such a testimony of great faith. may God Bless you!!! love simons family

At 7:31 AM, Anonymous Anonymous said...

Please know we are weeping and praying with your family. We so admire your faith that is holding strong through your this ordeal. We will continue to pray that you cling to the Lord through this, for He is our ONLY source of hope. We're praying for dear Ellie that God will give her and all of you the peace that passes understanding. Our church is praying for Ellie and your family also.
love, Holly Scheidemantle

At 8:45 AM, Blogger oneofhisfriends said...

Hi all,

Much prayer.


At 9:34 AM, Blogger Mollie said...

My gut instinct is to go to pick up my kids at school, hug them fiercely and then go do something fun. None of us are guaranteed tomorrow and I am reminded that this world is not home. Thank you for your openness. Praying for you all.

At 10:02 AM, Blogger Arlen said...

Very well expressed. You have drawn us all into your lives through your sharing the way you do.
We have been attending a class on the Psalms. It has been so good. In spite of the anguish of the writers of the 'sad' Psalms, the chapters almost always end in glory, praise and doxology. The book of Psalms ends that way, the life of Christ and so too for us who love and honour the Lord Jesus.
Praying is what we can do and we will continue to uphold you before our Father Who loves us more than we can ever know.
Arlen and Rhoda Johnson
NTM Sanford

At 10:14 AM, Anonymous Anonymous said...

“How frail is humanity!
How short is life, how full of trouble!
We blossom like a flower and then wither.
Like a passing shadow, we quickly disappear."

[But] the LORD is good; his mercy is everlasting; and his truth endureth to all generations... Who remembered us in our low estate: for his mercy endureth for ever:

Job 14:1,2; Psalm 100:5; Psalm 136:23

My heart is sobbing for your sorrow and at the same time hoping against hope for the faithfulness of our beloved Father.

I love you, Reni.

At 10:54 AM, Anonymous Anonymous said...

Praying for you!

At 10:57 AM, Anonymous Anonymous said...

You ARE so brave, all of you!


At 12:56 PM, Anonymous Anonymous said...

Is there an address in Montana where we can send cards, etc?

At 2:06 PM, Anonymous Melanie Miller said...

Oh Sarah,
You have such a way with words and it breaks my heart what our family is going through right now. You and John are facing what no parents want to ever have to face -- to see our children go through so much at such a young age seems unbearable. Yet, we do have to bear this and with your faith like a shining light in this darkness, you not only withstand this pain, you help a child find peace and ease during it all. That Ellie can turn around and smile again and smirk about cocoa puffs "being death on a stick" (I can just hear her!) is just so amazing. You are giving her so much life. Your faith touches me deeply -- thank you so much for sharing with us. You and Ellie have touched so many lives! Know that we are always willing to help in anyway, anytime and that you are so loved -- Mel

At 6:33 PM, Anonymous Rose Bolden said...

Dear Sarah and John,
I just wanted you to know that my heart brokes over your pain. I understand somewhat of the pain of seeing your child suffer. I have spent the last 15 minutes weeping over your pain. Know that you will be prayed for and that we will keep up with your postings. I will also get my after school kids to pray for Ellie. Tell her that 160 some kids in NC will be praying for her.
Take lots of pictures and videos of her and her with her family.
We know about Ellie from Ginger Harris, we worked together on the field of Mexico.
Love and Prayers,
Rose Bolden

At 7:45 PM, Blogger Pauleen said...

My words to you fall so short - you are an incredible example of godliness and wisdom - our prayers are being heard and our tears are being felt by our heavenly Father. You and your family are continually held up in prayer - many times each and every day.

At 8:04 PM, Blogger BreezieGirl said...

I don't know if my comment just hasn't been approved, but since I don't see it I thought I'd make sure that you know I'm still praying for you and your beautiful family. My heart broke as I read this, especially after following your story, Ellie's story, since the beginning. God will provide the best decision... God will provide.

At 8:05 PM, Anonymous Anonymous said...

Hi Sarah, Ellie, John & Ethan,
I've been keeping up with your blog for several months now - and I just wanted to let you know that I have prayed for your family as God has led. My heart is so heavy for your news - I can't imagine the hurt you're facing! May Jesus draw you very close to His heart during this time - giving you strength to walk day by day! My love to all of you. Tabitha B.

At 10:18 PM, Anonymous Anonymous said...

You should put a "Cry Warning" at the beginning of posts like this. My computer keyboard is wet from my tears.

Even though we've never met, your words inspire me to be a better mom. I figure if I keep reading, your appreciation for "the important things in life" will rub off on me, as I sometimes tend to forget to do in my daily life.

My heart is with you and your family,

Diana in Longwood

At 11:04 PM, Anonymous Anonymous said...

We are praying for you!

At 9:14 AM, Anonymous Anonymous said...

No words can express my heartache for you all. I am praying for you!

Theresa (Pauly) Gustafson

At 10:34 AM, Anonymous Anonymous said...

Your pain and suffering, and your laughing, loving and living have been a testimony to God's active grace in your lives...we are following and praying always....

At 11:06 AM, Anonymous Anonymous said...

Sarah,I dont know you, but I have heard so much about you, John, Ethan and Ellie, from Cindy (APH),I almost feel I know you. my heart goes out to you and Ellie, my thoughts and prayers are certainly with you at all times.My love to you all
Sheila Russell (Cindy's Mum)

At 1:54 PM, Anonymous Jill Heins said...

With tears...and faith,
holding you all up to the Father of us all who gives us His everlasting Peace.
Love always,

At 4:34 PM, Blogger Gerry said...

Sarah and Ellie - As I read all the comments back to you I am so amazed at all the people you have got to know in the last year. From all over the world people have either heard your story from others, met you on a ferris wheel in NYC, met you on planes, trains, taxis, and of course me, the silly lady at the Today Show and American Girl NYC. How is it that God put you where each of us would meet you and follow this path with you? You say you draw strength from us but Sarah, we are so blessed to have you, Ellie and your family to pray for and to watch. There are no words to make you feel better or to have things go away - but prayers continue loudly and asking our Savior for a miracle. I cannot thank you enough for allowing me to become a friend of you and sweet Miss Ellie. Although my heart breaks; to read your words and feel your heart totally wows me. This blog helps me get my daily fix of the Skees family - the most faithful, God loving people I know. You have touched my heart. (ok..this is real long - if you want to read and delete it's fine :) Gerry

At 10:39 PM, Blogger Sheila said...

Wow. I don't know what to say except wow. You have leaned on God SO incredibly, and it makes me look at my faith and examine where I really and truly am with God. Am I at a point where I could say the things to my daughter (if I had one) that you said to yours? I commend you very much for everything! I am praying very hard for Ellie, and will continue to do so.

In Christ Alone,

At 10:53 AM, Anonymous Anonymous said...

Mrs. Skees,
Everytime i get on ellie's blog, i always seem to have tears rolling down my face either happy tears because i'm excited ellie's doing a lot better or sad tears because i know things aren't going well and ellie's stength through all of this is just amazing. And i know that God keeps giving you strength everyday to get through this and i think that your guy's faith through all of this is absolutely great! I can't tell you how much i think of you all and pray for you guys. Even though it's hard to think of at this time, God is always right there with every step you take and i know that you guys will chose the right path
for ellie! You guys will always be in my prayers everyday!
Stacy Frazier


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